A Mixed Bag

• The girls enjoyed planting wave petunias in GB's garden. Hope asked for a garden of her own.
• GB's  anxiety level is at an all time high. I started Tapping with her last week and now she wants it every night. She says she sleeps better.
• Hope hasn't bitten me in two whole days. Her psychiatrist said I had to go for a tetanus booster and told me  that the prognosis for Hope was pretty grim.
• I called the waiver worker yesterday morning and she spent an hour and a half telling Hope that physical attacks had to stop. The worker is meeting with the school tomorrow, as it is required by one of her forms.
• We are driving to Raleigh, North Carolina, for my niece's graduation tonight.
• GB's teacher said she has been resistant for the last couple of weeks. I made an appointment for next week so that GB, the teacher, and I can meet. I am not sure exactly what "resistant" means.
• Hope is up to 15 mg daily of Abilify. That is a lot for a 60# six year old.
• I have to call my doctor this morning to get an appointment for my tetanus booster and to make sure I have enough Valium to knock me out for the car ride. The Dad did not want to put Hope in respite while we were in North Carolina.

My Friend, the Papoose Board

The first week after Parenting in SPACE was better. Hope didn't seem to care that we were gone, DAY (Defiance, Aggression, Yelling) was working well for both girls. The Home and Community waiver worker worked with Hope and I to come up with safety plan, which incorporated  the Papoose board. We went to visit friends for three days and were rage free. It wasn't good- Hope was still stealing and lying everyday and she ended up with 3 or 4 DOs most days, but it WAS better.


Then Therapy Tuesday came. Right now, we are not doing therapy on Tuesday because we are still on waiting lists for an attachment therapist- lot's of them. Hope had been caught Monday night with a toy that she took from her classroom. I told her she would have to return it. Tuesday morning I checked to make sure the toy was in her book bag. I told her I was going to email Ms. V.Y. Teacher, so that she would know what was going on. Nothing new- I have been in regular email contact with her teacher since Hope's honeymoon ended. Hope has always been aware of it.


Tuesday morning brought a different reaction from Hope; she swiftly crossed the room and kicked me. She then sat on my laptop so I couldn't email her teacher. I called her on aggression because she kicked me and told her to have a seat. She raged. She raged through the bus pick up. she raged through the first hour of school. She raged in the Papoose board, so nobody got hurt. When she calmed down and was in control of her body again, The Dad took her to school and the school  therapist processed the stealing behaviors with her again.


It was pouring after school  and I waited at the bottom of the driveway in my car for their bus to come. GB got off the bus complaining of too much homework, and Hope got off with her arms crossed in front of her trying to pin me with her death ray stare. They got in the car and I drove up and around the driveway to the front door. GB quickly went inside to see the Dad. I was gathering up my stuff to bring in when I felt a sharp pain on my head I looked up to see Hope's face inches from mine. She had unbuckled and deliberately head butted me because she thought I was taking too long. I told her that head butting was aggression and she had to go inside and take a seat. She raced ahead of me and by the time I got inside, she had already kicked The Dad. We went through the Papoose board routine and Hope calmed in less then thirty minutes. The Dad let her up and reminded her that she still had time to do and a DO when her time was done. The Dad went upstairs to take a work call and moments later, as I was walking into the kitchen, Hope comes over and deliberately sunk her teeth in me and kept on attacking. I wrestled her into the Papoose board and ended up with another bite, a lot of claw marks, and a bruised right breast. It took over an hour for her to calm down. I wasn't taking any more chances of being beat up today, so Hope had a PRN and her night time meds before I let her up. I fed her a quick dinner and she was in bed by 6:00.When she realized her night was over, she started screaming again.I told her I hoped tomorrow would be a better day.

Wednesday  was better- only one rage and Hope caught up on her DOs. We all had ice cream for dessert, she went to bed easily, and I had reasonable hopes for Thursday. Hope went to school with minimal difficulties Thursday morning and did a good job on her HW without trying to involve anyone else. Dinner was uneventful and I was hoping for a quiet bedtime. My hopes were dashed when Hope spit her medication in my face. I gave it back and insisted she take it. Once she had swallowed her meds, I turned to check her tub. That was the first time she bit me. She got four bites on me before I got her out her safely out of the bathroom.  She raged for the better part of an hour. Once she calmed down, a quick bath was followed by bedtime.


I am discouraged and sore. Tuesday was the worse day Hope has had in over a year. I am grateful for the Papoose board, because without it, I would have looked like an abused woman again. The HCWS worker is meeting with us and the school today to finish our service plan. I hope they provide some support soon.

Therapy Tuesday Is No More

Today we went to see the girls' psychiatrist. She gave her blessings to stopping therapy until we find a Dan Hughes trained attachment  therapist. We are currently on four different waiting lists for  therapists I have interviewed over the phone. I will interview them in person as they have openings. The psychiatrist is concerned with finding GB more time away from Hope and the stress that accompanies being near her.  That should be possible now that we have waiver services for Hope.


Hope had four vicious tantrums over the weekend. The Dad is no longer allowing her to triangulate (thank you, Michael!) and Hope is not taking it well. The waiver service social worker is coming today to help us set goals for Hope. I have no idea of how many hours we are going to get, but I am hopeful.


We had several instances of Hope acquiring things that do not belong to her.  Trying to track down where they came from.

Support Needed

Today, at 3:30 PM Eastern Time, Hope's ICM caseworker, the new waiver caseworker, and the new caseworker's supervisor are meeting with The Dad and I here to see what support they can give us. If they say her needs are too intense, the only help left is an RTF and we won't do it. 


Please pray for us all- that we will have support from this program and peace will visit (at least occasionally) again.

I Slayed a Dragon

Today, I slayed one of my dragons. Not using a sword. Not using my intellect. I slayed this dragon with an abundance of paperwork. Every email, every note home, every Tuesday Therapy post, every piece of paper I could find, I dumped on the SPOA  meeting table., along with the IEPs and evaluations that weren't good enough last week. The ICM worker was eloquent in her description of me getting the sh*t beat out of me. Hope has been approved for waiver services.


No time to celebrate. Next dragon is  family court with MK this afternoon. I will update on MK and Booboo on the other blog when I get back.


Thank you all for your prayers and support. I appreciate everyone of you.

Taking on SPOA

The SPOA committee meets again tomorrow morning. I have all my bogus paperwork from Texas. I have the listing from CHASK. I have my very knowledgeable friend's translation of this listing. I have  a copy of every email Ms. V.Y. Teacher has sent me since Hope crashed in November. Good thoughts and prayers are appreciated.

I Lied

On Monday, I posted that I had no expectations that the meeting set up by Hope's ICM worker would result in any real help for us. At the time, I thought that is what I believed. Alas, I was kidding myself, The Dad, and everybody else at that meeting. I only realized it today.


The ICM worker called today and said the SPOA committee turned down her request to transfer Hope to a program that would meet her/our needs- one with on call 24/7 crisis management, behavior management services, and regular respite. I wasn't surprised, but after I hung up I found myself close to tears.


SPOA wants more records of psychological and psychiatric testing on Hope. They already have all the records of every evaluation that has been done on her. There is nothing else to give them.


Hope had her usual difficult morning, but did make it to school. This afternoon, I do not have it in me. I took her book bag without looking at her communication log or homework and set her in front of the TV, where she  will happily vegetate until dinner. After dinner, it is medication and bed. Therapeutic? No. It is what it is.

Important Stuff

Hope's meeting today gathered information. The information  will presented to SPOA tomorrow and we probably won't hear anything until Thursday.


One of my Trauma Mama friends' son made a really bad choice. My  friend was devastated. I am so proud of the way our group rallied around her with love, support, information, and practical help. There is no other group of ladies I would rather have my back then this group. I love them all.

There Is No Cavalry

Hope had another rage last night, and The Dad was home and was the lucky ragee. The social worker from ICM called this morning and said that Hope's needs were too severe for her program. Her supervisor wants us to meet with the teacher, school therapist, outside therapist and ICM worker. Of course, it won't be until after Easter break. After/if we do that, she wants to refer us to a 4-6 week program that DSS runs. It is not the program that the worker feels Hope would benefit from. The worker said maybe we can get referred to the program that would meet Hope's needs from the 4-6 week program. We have had Hope 19 months now and I have less than no interest in getting involved with DSS. The program currently not giving Hope services is run by the Mental Health Association. The program she needs is run by MHA. I am too old to jump through hoops just because that is the way it is done.


To answer some questions from the last post:


Hope is disassociating, but that does not necessarily mean she has Dissociative Identity Disorder. There are four dissociative disorders and I am not sure they can differentiate between them at Hope's age. They are not sure she doesn't have DID either.

Nobody has ever been prosecuted for what happened to Hope. The abuse was preverbal, which means Hope has no words for what happened. The first adoptive family has not been cooperative.

An RTC is a residential treatment center for children with behavioral problems. It is in the same branch of services that foster homes and group homes are in. The state has custody of your child.


An RTF is a residential treatment facility for children with severe psychiatric illnesses. The level of treatment is more intense, there are fewer beds, and it is much more expensive. It has nothing to do with DSS and you keep custody of your child. It is administered by the same people that oversee MHA.


It is hard and it is exhausting living with a young child with severe RAD and probably other major mental illnesses. I appreciate all the support I get from my readers. Thank you.

Therapy Tuesday with a Twist

Yesterday was Therapy Tuesday. I received an email from Ms. VY Teacher detailing a complex lie Hope was caught in and the lies she told to get out of the first lie. Hope was not happy... she had told me she had a good day.


We fed them and went to therapy. The Dad dropped the girls and I off and went to get more coffee. As soon as we walked in the therapist's waiting room, Hope realized she for got her pencil. I told her she could get it when The Dad came back. That started her rage. As she was trying to kick and punch me and I was trying to get her in a therapeutic hold, GB became agitated and tried to defend me. While I was keeping GB from hurting Hope and getting her in her own space, Hope took advantage of the opportunity to head butt me.


I took her down to the floor, which was hard linoleum and dirty, and she started pounding her face into the floor. She ended up with a bruised face and a bloody lip.


In the middle of this, Hope's social worker from ICM walked in. She was there to work with the therapist and me on a safety plan. The therapist told the social worker that Hope dissociates regularly, with no warning. She said that Hope was severely sexually and physically abused. She also said Hope did not need an RTC, she needed an RTF. 


The social worker's response was that she thinks Hope requires a higher level of care than she can supply and she is going to speak to her supervisor about transferring Hope's case.


I am bruised and battered and doubt the cavalry even exists.

And The Cavalry Is A Comming!

A lot has happened in the last three days. We had two CSE meetings, Therapy Tuesday, new sensory activities, and made a couple of decisions. None of that makes the radar screen today. I am sure it will later in the week. So, the news that is the center of my life right now?


The cavalry is coming! The Dad and I met with the intake worker for the ICM (intensive case management) program for two hours. It is run by the Mental Health Association. We got the consent signing out of the way quickly, and started talking about Hope. We needed to go into her history in excruciating detail. I found that painful to do... the child comes from such a difficult place.


Next we had to list all of Hope's needs, and prioritize them. We ended up with anger management, impulsiveness, sexual acting out, and physical aggression. We then listed our needs. We need an in-home tutor so that we are out of the daily homework battle. Weekend respite. A number to call to bring in reinforcements when the Raging starts. Time for GB. Most importantly, an agency who has our back when we get turned into CPS, which is inevitable. 

I feel hope and confidence that raising Hope is possible.

Yay for the cavalry!

Relief

A week ago yesterday, I submitted a SPOA form to try to get some support for Hope. Today, I received a phone call from a social worker from the program I was hoping to get Hope into. The committee has already met, the application approved, the referral sent and accepted. A worker is coming on Tuesday to do the paperwork. It is a blessing.


Hope and I spent the afternoon together, just the two of us. She raged, but they were short lived once I reminded her Daddy wouldn't be home for three days. Tomorrow I  we are going to get rid of all the contraband (nail polish, paint, sharpies, ect) in the house.

Constructive Steps

Although Orlando has been occupying my mind most of this week, I have managed to  start  the wheels in motion to get more services for the girls. I finally located an elusive SPOA form. SPOA stands for single point of access, and is the golden key to accessing mental health services beyond what private insurance will cover. Hope's therapist says she will qualify for intensive case management. This will include respite, community access aides, and crisis management. 

I finally heard from the medicaid waiver people for GB. They sent 12 (double sided) pages to be filled out and it has to be returned before March 9th. School was closed yesterday and today, then comes Orlando. I will get the forms done next Tuesday.

The added support is necessary.

A Little Prayer Wouldn't Hurt...

Tomorrow is Hope's our big day. We see the pediatric cardiologist and hopefully get Hope cleared for medication. Please keep us in your prayers and thoughts... we truly need it.


Hope now has her own bedroom and the alarms are scheduled to be delivered Thursday. The therapist is talking about day treatment for Hope and wants to fill out a SPOA. I thought that was only for RTCs but apparently I am wrong.

T.I.R.E.D

Valentine Day has passed, but Hope continues to escalate. Since Hope sabotaged the Holter monitor again, we see the pediatric cardiologist on Wednesday and pray that he will clear her for meds. The school keeps inquiring about meds. 


I have an intake worker coming from an intensive keep-the-child-in-the -home-program, hopefully to give more support until we can somewhat stabilize Hope on meds. We are NOT contemplating an out of home placement for her. However, her behavior warrants it and we are getting services based on that. Having more support in the house while I am busy enjoying ORLANDO can't be a bad thing for The Dad.


In case I have given anybody the impression that I always know what to do, I want to state here; there are many times when I am just guessing or am too T.I.R.E.D to be therapeutic. Today might be one of those days. I will know when Hope and GB get off the bus at 3:30.

Support Group

A friend of mine, who is an outstanding Trauma Mama, is starting a support group for Adoptive families on the verge of disruption/dissolution. More information can be found here.

The CSE and Our Bottom Line

Today the girls quarterly Program Review CSE meeting finally took place. We made my before Thanksgiving deadline. Hope was my primary concern this time. My will-not-accept-no-as-an-answer position on Hope was she needed to receive more speech. They gave us more speech.


GB's meeting was a pleasure. They were able to explain to me all of the details for her current reading program and which person is accountable for each piece of it. The reading specialist, who is the new member of the team, said she thought that GB would mainstream into third grade beautifully. I didn't have to say anything as the rest of GB's team told the reading specialist that GB couldn't function in a classroom with that many  people. Everybody  commented on the big difference they have seen in GB the last 4 weeks. I took notes, and nodded at each person. Mr. Teacher told the rest of the committee about the medication change and his opinion that getting GB off Invega and Risperdal had a lot to do with it. Her current IEP did not have her social goals well spelled out. The committee took the time to spell them out and assign responsibility for overseeing them. We will meet again the end of January.


Hope's meeting was not a pleasure. While Ms Very Young Teacher was reporting on the difficulties Hope has been having, the speech teacher interrupted several times to say that Hope's emotional and behavioral difficulties were responsible for Hope's difficulties making herself understood. The speech teacher also asked about mainstreaming as Hope had been mainstreamed last year. Ms. VY Teacher said Hope was starting to be comfortable enough in her class that her problems were easily apparent and she would not recommend mainstreaming until Hope developed more appropriate coping mechanisms. The therapist strongly supported her position. We spoke about the ongoing battle over home work. It was decided that we would set a timer and tell Hope she had 30 minutes to complete her homework. When the timer goes off, homework will go into her book bag. Anything not complete or incorrect will be completed at school the morning during the class' free time. The therapist also suggested using the timer at dinner. Set it for thirty minutes and when the timer goes off, her dinner is over and the plate removed. I agreed to try it. The speech teacher reported that Hope was not progressing as fast as she should because she was a "slow starter" and for the first 10-12 minutes of every session it was as if Hope had never had speech before. Since the sessions are only 30 minutes long, that mean the first 1/3 of every session is nonproductive by the speech teacher's own report. The speech teacher did not see the need to increase Hope's speech sessions because she only tests with a moderate articulation disorder. The rest of the committee used her words (and my analysis) to justify increasing her speech. If I still do not see progress by the next meeting, I am going to request that either Hope be moved to GB's speech therapist, or an outside, independent evaluation be done. Hopefully, speech 3 x a week will be enough to make some progress. I let the CSE know that Hope is being weaned off the Risperdal, with no replacement med in sight, so I expect things to get more difficult.

We are now free to enjoy the holidays. Our next scheduled battle meeting for both girls is the end of January, 2012.

Things I Didn't Know

• There was a court ruling that said "teacher observation" is an inadequate way to determine whether a goal has been met or not.
• There has to be a well defined, easily accessible (for parents) method of determining necessity of an Extended Year Program. Regression is not the only criteria they can use to determine eligibility.
• There have been requirements for adequate teacher training since 2004. This includes training particular to your child's disability(ies).
• IDEA 2004  raises the quality of  FAPE. NCLB actually did accomplish something.
• I didn't know you had to save up Mojo before an important meeting. I smiled sweetly Friday. I will spend the  next 4 weeks, until we reconvene, lining up my ducks.

A Child's Future: Determined by Economics

Foster Abba, over at The Final Maze has been writing thought provoking posts on the cost of special needs adoption. They have been banging around my head, but nothing jelled until a friend made the comment that the services her RADling needed were available in her town. So why isn't the child receiving them? Their state medicaid won't pay for them and they can not pay out of pocket.

GB is getting exactly what she needs from the school district. Our school district is better than most local school districts, but the real reason GB is getting what she needs is that we could afford a lawyer, and paid her almost seven thousand of dollars. Until three months ago, all of GB's psychiatric care was paid out of pocket because nobody competent accepted ANY kind of insurance. Thousands of dollars. I don't know exactly how much because I didn't want to know and am fortunate enough to be in a position that the money was available. We recently switched the girls to a provider who accepts our insurance. She wasn't taking new patients, but with finesse (yes, me), persistence, and a little outside help, we eventually got them in. It only took seven months. She has just the right experience and I am thrilled. Until this morning, I hadn't given the fact that the provider she belongs to doesn't accept medicaid. GB's medicaid waiver was approved last week. I applied now so that as an adult she would be eligible for all the DDSO services. Now, she could receive pca and respite hours and  social groups. Even without the medicaid, GB would have these services. I want DDSO services for when I am no longer here to take care of her.

Where am I going with this? The way the system works now, a special needs child may be looking at two very different outcomes for their life, depending on how much money their adoptive family has to pay for private services. That is wrong on so many levels. Society is responsible for these children and when they take on this responsibility, they we take on the obligation to do it right.

I wrote this from the perspective of an adoptive parent. I haven't been a foster parent for many years, but as I reread what I wrote, the argument holds up for foster children as well. If we take a child from their biological family, we take on the responsibility  and obligation to do it right.

Economics should never determine a child's future. Society has an obligation to provide what each child needs.

The Juggler: I Just Do Not Know if I Can...

GB got off the bus Friday and said the aide yelled at her to knock it off and hit her leg. I immediately took Hope aside and asked her what she saw. She told me as GB was getting off the bus, and the aide hit her leg. I called the bus company. The owner  called me back  late Friday night and said he spoke to both the aide and the driver and they both said nothing happened and he was backing them. He said "The aide said GB was a fibber". I said GB might misinterpret the situation, but if she said the aide hit her leg and Hope independently said the same thing, then physical contact was made. He said " I am telling you, I am backing my people. I have known them a long time and they would never do anything like this"

I am so angry, I want to tear the people involved into a billion very tiny pieces. I am also so tired. I don't know if I have it in me to deal with all the ignorant people I would have to deal with. I am looking at Monday's calendar, wondering where I can squeeze in time to actually speak to the people involved and to the people responsible for their actions.  I have to figure out what complaint forms need to be filled out to go with my written letter of complaint. In order to actually get a response from the school district, I know I will have to escalate  to the State Education Department. Been there, done that.

I know what I should do. I know what I want to do. I am concerned that if I do it, that's one more ball in the air. That ball maybe the ball that pushes me beyond what I can do. It may the ball that causes me to drop all the balls I have been juggling for so long. What use is a juggler that can't keep the balls in the air?